When A New Challenge Arises

It was just after graduation in the summer of 1995, when I was 16 and ready to take on the world, that I went with my sister to volunteer for the Joni And Friends (JAF) Ministries Family Retreat for the first time. Sara had gone the year before, and it noticeably changed her and her outlook on life forever. In a good way! As close siblings, we were nearly inseparable, and I knew I wanted to spend that week of my summer in this way, too, the next time the opportunity came around. I even wrote a letter to get special permission since the minimum age requirement was 17.

Well, what I will admit, and possibly I’ve never told anyone, is that I was really, really scared to do this; to work with families who had a disabled member. To immerse myself in that world of constant exposure to the realities that these families live with all the time. Because you guys, it’s not easy! In fact, it’s life-altering, because there is often no recovery. No “this too shall pass.” It’s permanent. It’s the way the world is painted, ever after.

It’s isolating, because very few understand. It’s othering, because as soon as they go out in public, there are the stares, and people taking the long way around them, avoiding eye contact, or they seem to have a lack of courteous boundaries. (No, you can’t just waltz up and lean on the arm of their wheelchair and call them “buddy,” okay?) And there are still, STILL, quite a few places inaccessible to wheelchairs.

Little did I know how much I’d come to love the world I was launching into when I volunteered that first summer. And it turns out I didn’t need to be scared, because the JAF Ministries staff knew their stuff, and they knew how to keep the environment safe. They spent a whole day teaching volunteers about boundaries and etiquette, and even incorporated some role play to build empathy. The Spirit was present in that place, in an almost palpable way. And I got my heart stretched, and stretched, and stretched some more. I fell in love with the ministry.

For the next 8 or 9 summers, (quite honestly, I lost count,) my sisters and I would raise the funds in order to volunteer for the JAF family camp. Because it was our family, too. There were no “others,” just a great big “Us.” We poured our souls into this ministry, and it felt like home. I’m a little sad that having a family of my own has made me lose touch with this part of myself, because it was and is real. Those retreats are holy ground.

But in those carefree summer days, we came home from it all. We slept for a week to recover from those 18-hour days that are some families’ everyday reality. We wrote stories of our experiences in thank-you letters to our supporters. We made disability awareness part of our conversations with all our friends. That was the easy part.

But what happens when you can’t come home from it, because it IS in your home?

My son's condition is not severe. I'm grateful he does not have too many limitations as yet; that his symptoms can be treated for improved mobility. But I still have a lot of questions, and there are a lot of future needs to consider.

Because of my experience with JAF Ministries, I know they are a trustworthy source for help, even if we vary on some issues. They have a genuine commitment to compassion, education, and empathy. They have resources to offer to assist families navigating all the questions, like this PDF addressing the initial "what now?" that arises with a diagnosis.

What about you? Do you have a favorite resource to recommend to families processing a new diagnosis? Please share.

Do you have special needs in your circle of friendships? I encourage you to reach out.

Am I still in scaredsville? Yes, but I'm not going to let it paralyze me. I'm preparing to have my heart stretched once again.

This post is part 2 in a series on processing our present reality. Go here to read part 1, and here to read part 3.